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Rett's Roost The Gift of Grief
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The Gift of Grief

It’s been just about ten months since I held him in my arms–the same amount of time we got to spend with our son in this lifetime. And during this time, I’ve read a lot about grief and followed other people’s journeys through it, because I’d never really felt anything like it before, and I hoped to embrace this new life rather than fall victim to it.

Before Everett was sick, I was oblivious to this world where sadness is a normal, familiar emotion and grieving a daily ritual. I also realized that there are people out there that get it, and others that don’t. It really is that divided. And on 2/22/15, I was asked by my son to switch teams.

I don’t mean to stereotype the empathetic versus the non, but it’s almost as though my life has been in black and white this year. The important people have shifted or have been illuminated. Now when I meet or find out someone has felt great loss in their life, or even has the courage and compassion to talk about mine, I immediately feel connected to them. They get it.

Losing my only child was enlightening. I was suddenly awakened to the suffering experienced by so many, which I’ll reluctantly admit, was somewhat novel to me growing up in a white middle-class happy home.

So, I’ve accepted my new position in life. While I do have days when I break down and wish Rett was still here, I almost immediately catch myself accepting this path of grief as something valuable and meant for me.

My son gave me a gift and I really do want everyone to know what a powerful gift it is—to be content with my sadness.

I use the words content and enlightened lightly, because they are not typical for a grieving parent to say. They are big, powerful attainments in life. And I do not claim that I live this perfectly conscious life where I don’t nag my husband or wish for more money or judge a soul.

But I do want people to know that a person can live a contented, fulfilling life after an excruciating loss.

Grief is not something we should ignore or fear as a society, because it happens to almost all of us on some level. When we pin sadness against happiness, as though they are opposites, we alienate an entire population of people. We tell them that they are not normal, and that there are drugs for their “negative” feelings.

In my online support groups, I read about grieving people being told to move on. This blows my mind! We will never move on. To move on is just to mask your grief, with typically horrible implications.

But there are tools to live with grief, so that our sadness doesn’t sabotage our physical or mental health or our relationships. Instead of ignoring our pain, we can use our sadness as a catalyst to help others, to simply be a person with empathy and the willingness to experience a full spectrum of emotions.

Grief is something that accumulates in our bodies. If we don’t face it, it will materialize into other issues. Recently I found some nodules on my thyroid. These are pretty common and I am having them tested for something serious. But a friend mentioned to me that they are often found in those that are grieving. In a way, they are basically a metaphor for the lump in my throat I feel each time I want to cry.

Have I been holding back my tears? Maybe a little. I somehow read an entire eulogy to Rett at his memorial without breaking down.

I’ve read that tears are our emotional perspiration. The body has many methods of detoxing, and like sweat and elimination, weeping is one. If you are interested, here’s how. My hopefully benign, health issue has made me realize the importance of my tears and I’m trying to be better at letting them flow.

Just last night I picked up one of my favorite books I used to read Rett, “Little Owl’s Night.” Waterworks ensued, followed by a sweet, consoling husband. It was a necessary sad moment for both of us—an effective purification.

Some grievers hate this phrase, but we often say, “Rett wants us to be happy.” We can feel his smiling, playful spirit—all it takes is daily intention and attention. But he also wants us to miss and remember him too, because that is what makes us feel whole and human. Simply, another gift we treasure from our son.

Another consolation never to offer a bereaved person is, “There is a reason for their passing. God needed another angel.” Once again we stray from the norm, because we are the first to admit there is SO MUCH MEANING behind Rett’s passing. We may still question why this happened to him, but we do not question whether Rett is doing God’s work and guiding us from afar.

I am still so new at this journey. And I don’t want to make it seem like I’ve got it all figured out. Who knows what year two will be like? I’ll have Rett’s little sister to care for and be grateful about. I’ve promised myself not to let our loss affect her life negatively. But I do want her to grow up knowing that it’s ok to feel sadness. And how being an empathetic person will cultivate love and acceptance in a world that can so often be disguised in ambivalence.

Christmas will be hard. Like every parent who’s missing a child from the picture, I’ll admit that. But I recognize the gifts of empathy, acceptance, and contentment Rett has given us, to gratefully place alongside our gift of sadness. This holiday, which can be so full of magic, may you all find a few non-material, life altering presents under your tree. May the twinkle of lights, the sparkle of snowflakes, and a flickering fire remind you of the spirits that surround us with their astral energy. And finally, may you shed a few empathetic tears in revelation of grief as a ubiquitous human experience that should never be quelled.



  • http://hickory-high.com/ Ian Levy

    Little Owl’s Night is one of my three-year old son’s favorites too. It is a beautiful little book and I never made the connection with Rett until now. Thank you so much for the work you and Jim are doing. Your moments of poise, and acknowledgement of the moments without it, are continually inspiring. Every time I read you or Jim writing about your experiences I find myself learning something new about the loss and grief in my own life. May your grief be present this holiday season and be matched equally by moments of joy and humor.

    — Ian (I’m a digital basketball friend of Jim’s)

  • Barbara Finley Cacarillo

    Deana, I wrote a long and heartfelt post here, but since I am technologically deficient, it got lost. But I now just want to tell you….”I. Get it”. Your post is beautiful, you are beautiful, and I love you. Blessings for beautiful moments through this holiday season.

  • Anne Murray Mozingo

    Such an articulate essay from your heart Deana! I get it! I am cheering you and Jim on in this rich journey! Brave souls who choose a life with such deep loss, brave souls! My favorite quote from my grief group facilitator that got me through a gazillion moments after Bill died was : “The depth of your pain today is equal to the depth of the joy that is coming to you!” “I’m golden, I’m golden,” I would shout when I would snap out of a moment of darkness with such relief at the certainty that the other end of the emotional spectrum was coming to me, as well!